I fought HIPAA... and HIPAA won.

When people find out that I am a pediatric nurse, the most common response I get is, "Wow, that must be hard."  And they are right.  It is hard.  Taking care of sick kids, dealing with stressed families, and handling challenging social situations is both physically and emotionally demanding.  But I take solace in knowing that I am a part of the patient's healing process.  I help make their owies go away, spoil them with stickers for being brave during procedures, and let them eat all the popsicles, ice cream, and pizza their diet allows if it's what helps their tummy feel better.  In the end, I am happiest when they are discharged because it means they are healthy and can go home to their families.

But sometimes I am a part of the patient's dying process as well.  Being in the float pool, I have the advantage of working on all the units, including the Hematology/Oncology/Transplant unit (HOT).  This floor provides care for infants, children, teens and young adults with cancer, blood disorders, or undergoing bone marrow transplants.  Patients on this unit tend to receive care over a lengthy period of time and for that reason I have gotten to know and consistently care for some extraordinary pediatric cancer patients.  I have rubbed their backs as they puked into emesis basins, held their hands during blood draws, and even once, sang the ABC's over and over to distract a patient during a central venous line (CVL) dressing change.

While each patient puts up a courageous battle against cancer, some sadly end in defeat. I have watched kids whittle away to nothing and the light in their eyes go dim.  Cancer steals their spirit breaks their families' hearts.  It is the reality of cancer and the reason I am so passionate about raising money to advance immunology therapy.  These patients, the ones who have passed and the ones still fighting, are the heart and drive of Striding For A Cure.

Unfortunately, I will not be able to publicly honor these kids or ever be able to fully express to their families what an influence their child has made on my life.  It was my hope to include a few patients and their families in the 26 people I am dedicating the marathon to, but hospital legalities have stymied this dream.  After speaking with representatives from the legal services, risk management, and corporate compliance departments at my place of employment, it has been determined that including patients in Striding For A Cure would be in violation of privacy rights defined by the Health Insurance Portability and Accountability Act (HIPAA) and defy the hospital's policies and procedures.

While I respect their decision, HIPAA, and the policies and procedures of the hospital, I am utterly disappointed.  While these children were my patients, they inspired Striding For A Cure.  But because they were my patients, they cannot take part.  It is an unfortunate paradox.  As the representative from legal services said, "There are so many privacy/confidentiality laws to protect patient/families that sometimes it puts obstacles in place for “good ideas."

Although the patients will remain nameless and their stories will go untold, their lives will not be forgotten.  Their lessons in living and loving life will far exceed their short but influential lifespans.  

Striding For A Cure is proof of that.